Any help appreciated... is it crohns?

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t-man's mom
New Member

Date Joined Jun 2010
Total Posts : 2
   Posted 6/24/2010 11:10 PM (GMT -6)   
I have a long story so bear with me... i will try and keep it short.
This is all reguarding my 4 yo son.

He was diagnosed with GERD as an infant and was on Prevacid for the first 2 years. It helped some, but never took all the crying away.

Starting early last year he had a bad stomach virus. Vomiting watery diarrhea, pain, fever etc.
Ever since has had loose stools, lower right abdominal pain and gets tired pretty easily.

At first it was only every 2 weeks or so that we noticed him complaining of the pain. We had stool tests for parasites, c-diff and infection. All came back neg. Then he had another "attack" as we call them. Debilitating lower right pain, some vomiting, low fever and very tired. Was told it was still from the virus over 1.5 mths before and he would be fine.

Had a few more of these attacks along with decreased appetite up until Jan of this year, when i got sick of them telling me it was still from the virus over 7 mths prior...
Had a full blood workup as they called it. CBC w/diff, chem 14, thyroid, crp, esr, ggt and the tests for celiac disease and IBD. There were tons of them. The only abnormals were his monocytes (slight elevation), AST (slight elevation), ESR was high normal, vacuolated neutrophils and the Anti Cbir1 ELISA was at 38 (high).

Was told it was prob nothing but to schedule an appt with a gi dr. Had an upper Gi series (looked good), an endoscopy( slight narrowing of esophagus and inflammation in the stomach) and a sigmoidoscopy (looked ok). Was told it was only reflux again and put back on prevacid. Not sure that GERD causes lower stomach pain, but tried it. Still never got better and has had more "attacks". He is now not wanting to do things he loved and he is so sad.

Since he vomits with some attacks the gi dr ordered a MRI of his brain. Brain looked good, but entire sinus cavity was very inflammed. So they now think vomiting is from post nasal drip and still ignore the pain and loose stools. Was put on zofran to control vomiting. @ months later was also put on Levsin to help with pain. I actually think it did help a bit, but he has now been taken back off it due to a new GI Dr.

Had a really bad attack in May. Was hospitalized for it. fever, vomiting, naswty diarrhea and horrible abdominal pain. His labs were abnormal as follows: very elevated WBC, high normal amount of bands, elevated CRP, elevated protime, low normal albumin, low normal protein, slight elevation of AST. Had an abdominal u?s to rule out appendix. It showed multiple lymph nodes in the lower right quadrant were enlarged and decreased visibility of liver. So they tested him for several viruses and hepatitis. All negative. Was told it was a tummy bug and sent home. More stool was done there and the calprotectin was also high (121). No parasites or growth. Urine normal. i am getting extremely frustrated and upset. They are now trying to tell me his pain must be in his head, b/c tests look ok.

A friend of minews little girl has CD and told me to look into it further. I cannot believe how much this disease sounds like him. Had a recheck ultrasound and liver looks better, lymph nodes are going down, but still a few enlarged in that area. Blood work has improved for the most part, but his pain has been down as well. They did do a new test called LDH which was elevated, but we are to recheck that in 2 weeks.

What I am wondering is if this sounds like I should push further diagnostic tests for Crohn's Disease? I am getting so drained and so is he. I hate to have to put him through all of this and have them just give up. Any advice or help would be wonderful. So sorry about the novel and please ask if you have further questions.

Thank you so much if you made it this far!

t-man's mom
New Member

Date Joined Jun 2010
Total Posts : 2
   Posted 6/24/2010 11:13 PM (GMT -6)   
should also add that he is currently on Nasonex (for possible allergies shown in MRI), prevacid 15mg twice daily, zofran 2-4mg at bedtime, probiotics, a multivitamin. Starting memorial Day he was taken off Levsin, and put on Periactin for possible abdominal migraines. I do agree it sounds kind of like what he has, but most kids with that do not have pain inbetween attacks and he does. Thanks again

Veteran Member

Date Joined Apr 2006
Total Posts : 634
   Posted 6/25/2010 3:29 AM (GMT -6)   
wow, you and your son have been through so much already. ((((((((((((hugs)))))))))))))))) for you and him. If he were my son, i would push for every test under the sun, but i too was fobbed off with the whole 'its stomach flu' after 9 months of severe D, vomiting, pain and a 3 stone weight loss. I truely hope you and he find a diagnosis. This forum is brill, no matter what the question, some-one will know something!!!
Dx - Crohn's - 2006, Depression = 2010
Currently - Humira fornightly, iron tablets, B12 3 monthly, prenatal vits+minerals
Tried - aza, pentasa, questran, infliximab
No crohns' surgeries to date, Episcleritis for 3 weeks,
Allergic to Infliximab
Doing BSc (Hons) degree Equine Science - some support from uni. This year has had to be split in to two.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 6/25/2010 7:59 AM (GMT -6)   
Hi T-man's Mom and welcome to Healingwell. I really think it sounds like Crohns. I think you should demand that they do a colonoscopy with biopsies and possibly a pill cam if the colonoscopy is not definitive. I feel so bad he is suffering so much. Hugs and prayers for you both. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Mar 2007
Total Posts : 1019
   Posted 6/25/2010 2:13 PM (GMT -6)   
You and your son have been through a lot. That's a really tough one to figure out. It seems like you're getting the runaround with doctors - as many of us have - where they can't figure it out, so they run a few tests and then give up.

I absolutely think you should push for more tests, for Crohn's and for other things too.

Where are you located? Can you find a pediatric IBD specialist? GI's are often not specialized in diagnosing/treating IBD, especially pediatric IBD.

First, you mentioned they checked for c-diff. Have they checked for this multiple times? It's common to get a false negative on this test, so it needs to be done at least three times to be sure.

Second, you mentioned a sigmoidoscopy was done, but that is not sufficient. A full colonoscopy needs to be done. Plenty of Crohn's people have clear sigmoidoscopies but have diseased colons farther up.

Third, you mentioned blood test specific for IBD and that his Anti Cbir1 was elevated. Was this part of the Prometheus Labs IBD Serology test? Or did they just test individually for antibodies? If it was the Prometheus Labs test, it will tell you with some degree of certainty whether or not it thinks it's Crohn's disease.

Fourth, you mentioned a radiological study of the abdomen, but the text didn't come through ("Had an abdominal u?s to rule out appendix.") What test was this? Has he had a CT enterography? He needs to have some way to image his small bowel *thoroughly.* He might be too young/small for the capsule endoscopy, so a CT scan is probably the way to go - or an MRI, if there is concern about radiation exposure from CT.

Fifth, you mentioned his fecal calproctectin was elevated. That definitely points to some inflammation, likely in the colon, that was missed on the sigmoidoscopy - further reason to do a full colonoscopy. The calproctectin test is fairly specific for IBD but it would need confirmation.

Six, although this certainly does sound like it could be Crohn's to me, it could be other things as well - infectious, such as Whipple's disease or cytomegalovirus, or something like amyloidosis, or an immune reaction to certain food proteins.

Veteran Member

Date Joined Apr 2006
Total Posts : 1884
   Posted 6/25/2010 9:51 PM (GMT -6)   
I agree that a colonoscopy might be a very good idea.
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 1000, 10mg zinc. SCD diet modified years ago to include potatoes and rice. 

Regular Member

Date Joined Nov 2008
Total Posts : 86
   Posted 6/26/2010 5:27 PM (GMT -6)   
I had the Prometheus 7 and ciliac blood test done. Not sure what it will show but the doctor said it could show if I have UC, CD or ciliacs through this lab work. Just a thought or something to ask about.
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